About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Tuesday, September 25, 2012

Hi Everyone! How are you? I've been doing well, considering the circumstances! For me, as long as there is no spontaneous bleeding, I'm good! Haven't had much of an appetite lately - probably all the meds I'm always on messes w/my stomach. Poor Mark is always trying to prepare me something good to eat!
This will be a quick entry, as I want to spend as much time as I can with our furry kids before we leave on another trip to CO! I always look forward to going, as I know I'm in the best care possible @ Swedish! Plus, I love everyone up there - they are so awesome! That is so important for a patient to feel safe, comfortable and well cared for! It gives Mark a little bit of a break from having to take care of me all the time too! I just found out last visit that Swedish has free WiFi - yay!
Shalon was recently in CO - she went for her 6 month check up and needed a little more embolization - the she'll return in another 6 months for another MRI to see if she is finally AVM free!

Our babies just celebrated a birthday! Prince Hanz is now 4 and Princess Bella is 2! For dinner, they got one of those Ceasars Gourmet Dinners in Filet mignon (the ones w/the white Westie on it)! They are so funny and we love them so much! Last time we took them to Petsmart, a little girl kept telling her dad, "I want to pet the blonde one"! Hanz is always good about performing his tricks - dancing on his hind legs, sitting, laying down and giving Mark a left handed high five! Bella used to lick everyone, but lately she's been acting shy around people! Too cute! Big sister Midori helped celebrate the occasion too w/her own party hat!
Recently, Celia took time out from her busy schedule to clean my teeth! Most of you know she is a dental hygenist and her husband Greg a dentist! My teeth are suffering as I go through my avm treatments - not too badly though. I'll deal with it.

Oh! I just finished reading a free nook book called All Roads lead to Austen - a Yearlong Journey with Jane by Amy Elizabeth Smith. I remember seeing it @ the Safeway in CO and wanting to get it. There were 2 free friday books this past week - one being Reader and Educator Guide to The Hobbit and Lord of the Rings. I'm only on Chapter 2 of The Hobbit - I'm taking it w/me to CO so I cn read it this time!
If you ever have a chance, check out the Brussels Griffon Fan Page on Facebook - one of the breeders Brussels just had puppies! So precious! Oh, that is Bella taking a nap!
Thank you all for your love, prayer and support. The journey continues ...
Much love to all of you!

Saturday, September 8, 2012

Hi everyone! How are you? I've been doing really great this past week! No bleeds - yay! Well, my place of employment changed insurances and it totally discobumerated some of my medical stuff! According to the insurance and our HR person @ work - nothing had changed, the benefits were all the same, but there was still some changes that had to be made. Had to say goodbye to Nurses on Wheels and find a new home health place! Really didn't want to see them go, Alma, Carlie, Melissa and Robert all took very good care of me! Alma came by to remove the needle in my mediport as that was always done every friday. My insurance e-mailed me the names of all the home health places in the network and I started with the one that had the name of Christ in it! I called Christus Spohn home health and spoke with a lady named Karen that was able to help me right away! I faxed her my insurance cards and before I knew it - I received a call from Debbie, one of their RN's! See photo of Debbie and I. She came by our home to put in a new needle in my mediport and access it so that Mark can give me the IV antibiotics! Unfortunately I'll have to do my own IV during my work day - I tend to be a little dingy and not retain information, so I'll have to write the instructions down step by step to make sure I'm doing it correctly! Debbie even brought an extension for my mediport so that would make it easier for me to handle! Well, just wanted to fill you in on the latest. Got a nice e-mail from a lady that has a 3 year old son w/an avm - she has been following my blog since January. I'm happy people out there are getting some information and I love hearing from anyone wanting to write! Actually, I thought there was room for a comment @ the end of each blog entry - but in case there is a problem I can be reached @ either: schumancynthia@gmail.com and I can access that from my phone or home computer. Or @ dulce@grandecom.net and I can only access that from my home computer. Here is another photo of Hanz and I - had just gotten home from work and he likes to come sit on my lap! Thanks everyone! I'm really excited about meeting Debbie - she is right around our age and very nice! Take care!

Cyndi

Ok, I'm also including a photo from the Brussels Griffon fan page of Mickey that belongs to Terry Rowe Amore. She looks a lot like our Bella! Also came across this photo of Mark, Mom and Hanz shortly after we had first gotten Hanz! Hanz turns 4 this month and Bella will be 2!

Monday, September 3, 2012

Hello! How is everyone? I hope you are enjoying this long weekend we are having! I am soooo grateful to have this extra day - to recover from what has not been too great so far, darn! Yeah, I didn't want you to think I'm over here having any fun. Sigh. I feel like I'm a prisoner in my own home. Started having bleeding issues again. Missed this past Thursday @ work due to that. Then started bleeding as I began to eat my dinner Friday night. So that had to be put on hold a couple of hours - I ate it cold later, I didn't care, I was hungry! Being on steroids after an embolization increases my appetite! Was hacking a bit Saturday in the early hours of the morning and that started a bleed. UGH! I had really wanted to try and go to Mass, and be able to visit w/one of my sister's friends that is in town! Last time I saw her was @ our wedding! Whenever I have a bleed, I just feel I can't go anywhere, so I can be near a sink and the supplies I need to pack my mouth and try to stop it!

I spent Sunday sitting on the couch reading or watching TV. Didn't even eat/drink anything until about 3pm for fear of bleeding. Had some clear Ensure then and later, Mark made me some scrambled eggs. Dinner was mashed potatos and broccoli and cheese! So delicious! Then, I'm afraid to brush my teeth and start a bleed, as that has happened before, so I am anxious about that! It is now Monday morning and am soooo happy for the luxury of being able to brush my teeth w/no problems! Wow! It's the little things .... You know, this avm reminds me of a dragon wanting to come out of a cave - it attacks then goes back into the cave to wait until the next time the victim is unsuspecting. Yes, I need to read The Hobbit!! Mom had been wanting to take us to dinner to give Chef Mark a break in the kitchen, and we finally hooked up for breakfast Sat. morning! We took the kiddos to the Vet. for a quick check up and then met her @ Cracker Barrel! I'm telling you this because as I eat, I have to set up a mirror where I can keep an eye on whether I see any blood trickling down my chin. I'm lucky I get a trickle, sometimes the bleeds in the early hours of the morning come quicker as my mouth spontaneously fills up with blood and I run to the bathroom sink to spit out clots! UGH!!!! To give you an idea of how the steroids increase my appetite, I had: 2 scrambled eggs, hash browns, 2 small bowls of grits, a pancake and 2 pieces of cornbread w/apple butter!

The weekend hasn't been all a disaster - yet! I'm hoping I might still get to see Celia's friend Liz today! I had hoped we could take the kiddos to Petsmart as there are sales going on and it's an outing for them and I really need to get to Wal-Greens and pick up more meds and gauze to pack my mouth when it bleeds! I didn't even want to do that yesterday!

On the bright side, I got on my Nook website and downloaded 21 free books! Yay! I love to read! Mom, Celia, Davis and I are all big readers! Greg likes audio books! I had been telling mom how I want to go back and read some of the classics, like "Grapes of Wrath" or "Wuthering Heights". Mom was @ Half Price Books the other day taking a bunch of her old books and picked up "The Grapes of Wrath" and is really enjoying it! I just love how some authors are so descriptive, you feel you are there or you are that character! I am Bella Swan Cullen! Ha, ha, ha! No, I'm not losing my mind (although the avm has me right on the edge @ times - the P.A.'s in Colorado swear they haven't sent anyone to the mental ward that is going through embolizations!), just wanted you to know my sense of humor is still in tact! As always, Nurse Mark is infusing my IV antibiotics 3 times a day over the weekend, as we keep fighting this pseudomonous infection! Oh! Great news - my brother-in-law Jim told Mark about a full size bed someone in his church had, so we're all finally sleeping in one room again! Yay! The kids are so happy! Thanks Jim! I had hoped to be able to visit w/Jim and Shelley over the weekend too - we'll see what this avm has in mind for me!

Bella hesitated to jump from my twin size hospital bed (I need to sleep propped up because of the avm) and Marks full size bed - Hanz mastered it right away! You would think they'd sleep where they had more room - nope! Woke up w/both furry kids with me on my bed! I love my babies - they are great therapy to get us through these rough times! The Olympic dog cartoon is Hanz - our nephew Mark calls him "little seizures" (instead of Little Ceasar's) because whenever we have anyone over, Hanz continuously wags his butt!!!

As always - we thank you for keeping up with us!

Love,

Mark, Cyndi, Hanz and Bella!

P.S. I added a cartoon and a photo of my favorite show The Big Bang Theory! Those guys are hilarious! Course I shouldn't just say guys, "Penny, Bernadette and Amy Farrah Fowler" are pretty funny too! Did you know that the actress that plays Bernadette doesn't actually speak in that pitch? It's weird to hear her in a "normal" voice! Also the guys that play Sheldon and Howard are each accomplished pianists and the actor that plays Raj married like the Miss Universe of his country not too long ago! "That's right, that's how we roll in the Shire" - Leonard dressed as Frodo!

I'd better go see what the kids are getting into! I may watch New Moon, as I just watched Twilight last weekend! Oh, and I am currently reading Pets in a Pickle on my nook!